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Original poster

TAMOXIFEN -the third thread ***

740 replies

MaryAnnSingleton · 26/02/2010 10:40

here we are- will put a link on the old thread.

OP posts:
haggisdoodle · 13/04/2010 20:45

Pennies - love the clip The bit about the cat food is so true... I reckon my boy cat is a bit of a six dinner sid - given his size I think that half of the neighbourhood feeds him. Sometimes he comes home smelling of perfume. If he was a man he would have been evicted long ago

notbloodybranston · 13/04/2010 22:43

Hi Kurri and Pennies - thanks for your messages.

Am aiming to try and get mum on here (Mum - if you are reading this at some point over the next few days - you need to talk to people instead of bottling and I promise not to badger you if you just come on this board or talk to the Christies nurse - deal?)

Pennies - I love that clip!

NBB

KurriKurri · 13/04/2010 22:59

NBB - your mum would be very welcome if she wanted to join us, but if she prefers to just read I'm sending her an encouraging wave.

Sometimes just saying 'I'm feeling fed up of it all' helps, - plenty of sympathetic ears here. Cancer is such a double whammy of making you feel physically rough and emotionally battered. Just knowing I wasn't alone helped me, and having a good old moan can be very therapeutic!

Pennies · 14/04/2010 08:49

ebbie22 - did you get to see your Dr yesterday to go through your notes? I hope so, and that you got some clarity.

NBB's mum - if you are reading this NBB is talking sense in what she says to you. It is so terribly scary at first but talking about it does help. i found other breast cancer websites a bit too scary at first (learnt too much too soon) but this thread is perfect - a little bit of info and A LOT of support. Feel free to join us whenever you can.

Taking the girls roller skating this morning. They've never been before and I've not done it for 12 years!!! I suspect I might be a You Tube most watched by the end of the day ! God, what if my wig falls off just as I go flying?!

Cakesandale · 14/04/2010 09:22

Hi Pennies -Good luck with the skating!!!!
NBB - I hope your Mum finds it helpful on here: she may of course want to just read - in which case hello, and welcome to NBB's Mum. Take a deep breath and battle on, you'll get to the end of the chemo sooner than it might feel at the moment, and if I can do it, so can you. We'll give you a virtual hand-hold any time you like.

Cakesandale · 14/04/2010 16:04

Ebbie - if you are about - I have been going back over the thread because i seem to have missed what is the matter with your hands? I can't find it, so forgive me, but what is it? And are they any better?

I have been to a focus group at the hospital today - cancer and herbal remedies.

sandripples · 14/04/2010 16:20

hi there. on tiny hospital keyboard, waving to all! OP went fine. had to use child size cannla 2 use tiny vein . was sick 5 times - sorry if tmi. but i feel fine 2dy and can eat. can;t move around thread v well but for new person, christies hhave good dvds o their website. yr mum might find them helpful. christies will also have a support grp to meet other women having chemo. i live near manchester if she;d like 2 chat.
i hope 2 get home 2moro if my drain ermits. ward much more peaceful than my 2 previous stays during winter bedlam so i;m quite ok (happy) this keyboard is hard work tho.
how is rwu? hpe u are all ok.

Cakesandale · 14/04/2010 17:34

Yay!!! Welcome back sandripples. So glad all went well and you are OK! Take it easy for a bit! Hope you get home tomorrow. Well done you!

Original poster
MaryAnnSingleton · 14/04/2010 19:15

am back !! SR -so happy that you are back well done and hope you are home v soon.
Pennies - I guess your dad just doesn't want to feel out of control,and being a doctor knows perhaps too much, but not neccessarily in a helpful way .
Hello and welcome to NBB
I have only just got back from MILs so haven't been able to read everything and see how you're all doing,so forgive my general posting. Missed you all-I do feel cut off without internet access (in the wilds of Nottighamshire) I thought if I had time yesterday I'd nip to the local library to use a computer,but had to go to town for MIL and then we went out to lunch.

OP posts:
KurriKurri · 14/04/2010 19:35

Hi all - very pleased everything went well SR - best of luck with the drain so you can get back home soon.

Nice to see you back MAS, I hope you had a nice restful break.

Well done for braving rollerskating Pennies, did you manage to stay upright? - hope you all had fun.

Went swimming this afternoon - I've got a couple more k's to do for my sponsored swim thing. Treated myself to a scone in John Lewis afterwards (putting back on any calories I used)

How was the focus group Cakes - anything interesting come up?

haggisdoodle · 14/04/2010 20:33

Hope you get home soon SR.
Has anyone heard from RWU lately???

Original poster
MaryAnnSingleton · 14/04/2010 21:30

Have looked on facebook and I think RWU might be away...

OP posts:
Cakesandale · 15/04/2010 09:22

Hi MAS - hope you had a good time, and that RWU is also doing good/fun things.

Focus group didn't bring up anything very specific except a general feeling that there is too little information available about what might help in the herbal line, and what should be avoided. The research is being sponsored by MacMillan, and hopefully it will help to fill that gap. But one thing I did learn, if anyone is taking Black Cohosh - STOP IT NOW if your are also on tamoxifen. Apparently mixing the 2 is very bad news.

There was one woman there who had declined tamoxifen and was self-medicating with violet leaf tea. Either very brave or very foolish - who knows. Certainly not me, I am going to go with medical opinion on this one...

Original poster
MaryAnnSingleton · 15/04/2010 09:42

very foolish,in my opinion,but ....

OP posts:
Cakesandale · 15/04/2010 10:32

I'd agree!

sandripples · 15/04/2010 10:56

me too. could be because my father was a dr but i tend to go with medical advice.

still draining 2 much. have any of u gone home with drain?

Cakesandale · 15/04/2010 11:07

Hi SR - yes, I went home with the drain. I stayed in hospital for one night, but went home and kept the drain in for a week, which is about the limit. I was still draining loads but they took it out anyway.

The district nurse came occasionally to see how I was doing but basically I emptied it myself, mostly (it is a bit yuk, isn't it [hmm} )

If you want to go home, push for it there is really no reason why not. And it will eventually stop draining, don't worry.

notbloodybranston · 15/04/2010 13:59

Hello

SR - hope you get home soon with or without the drain

Am lay here on my mum's bed watching lunchtime news. Mum says hi - I've read out all your posts. Don't quite know what to call her, as NBB's mum doesn't quite trip off the tongue.

I asked her to suggest a nickname but they are mainly unrepeatable as she is fed up today. So we're going to go with "Mac" if that's ok.... Will get her logged on probably this weekend.

We're very impressed with the amount of iceskating, swimming and focus grouping going on. Mac doesn't quite have the energy levels for that yet. Her scalp is tingling and is a bit uncomfortable - she says its like her hair has been parted in a strange way. She is starting to moult a bit but not great big chunks, just small amounts coming out when she brushes.

Hope you are all enjoing the weather

Love Sarah (NBB) and Joan (Mac)

Cakesandale · 15/04/2010 14:19

Hi NBB and Mac

It is quite a nasty time when the head itches and the hair starts to go, so big sympathies there. You'll have energy again soon - I finished chemo in october and rads at the end of November, so am a few months ahead of you. it takes time, and my energy levels are still unreliable, but I am much, much better that I was even a few weeks ago.

my hair - well, it is back. It is very short (I just about have a tiny fringe, and a pretty fierce crop). Sometimes it looks just plain stupid, sometimes it looks surprisingly like a proper punky style. Sigh. Onwards and upwards!

Jump in and post or just lurk, Mac - whichever suits. Either way you are very welcome and i am rooting for you. Take it easy. As they say - this too shall pass.

Cakesandale · 15/04/2010 14:38

And as we are also doing real names here - mine is Chris. Or as I am mostly called these days - Muuuuuuummmmm
xx

KurriKurri · 15/04/2010 17:01

Hi all - goodness each to their own, but I tend to go with what the medics. provide. (no objection to taking herbal things in addition, if they do no harm and make you feel better, but not instead.)

SR like Cakes I came home with a drain, IIRC I had op on a thurs. home on Fri. drain out Monday - the District nurse came out. Hope they let you out soon. definitely ask about the DN if that is what you would prefer, they ought to be able to arrange that for you.

Hello Mac, sorry you're feeling rotten today - at least as you get further into chemo, it becomes possible to predict to some extent when your lousy days are going to be. (not much comfort I know) I finished chemo a year ago, had rads, and now on herceptin - which you are having IIRC? - so any questions I can help with when you get to that stage please ask away.

Don't be too impressed with my swimming, I totally overdid it yesterday and am zonked out today. I never learn!

Love to all (first name here is Kate by the way)

sandripples · 15/04/2010 17:36

hi mac. i lost hair 3 wks ago. felt much better when i got it cut to half inch all over. then it came off in next 2-3 showers. it feels nicer when its gone. have you got nice scarves and caps ,wig etc?
thanks for drains tips!
Dinah

Original poster
MaryAnnSingleton · 15/04/2010 17:39

hello and welcome Mac - I can't comment on chemo as I didn't have it but did have rads last June/July. I get tired but I think it's more my brain in overdrive than physical. I do little in the way of exercise - no yoga or swimming to my shame- but I try to walk as much as possible !
My name is Jane btw

OP posts:
Original poster
MaryAnnSingleton · 15/04/2010 17:40

I will now be confused about who is who with RL names

OP posts:
reallywoundup · 15/04/2010 21:30

Hello all , long story but I'm still alive, I'm down in mas's neck of the woods ( or I was earlier I think- we went to Marwell for the day) I'm bring looked after down at my parent's house, after a dramatic few weeks! Only got my iPod for tinterweb access so I'll get back in touch when I get back home (hopefully tomorrow, I want my own bed!!)